The latest news from Lily...
1/26/11 Lily is now 2 1/2 years old and the thought it would be fun to write down some of the things that she is currently saying:
MORE TO COME LATER! Lily needs my attention.
4/07/09 Miss Lily is 10 months old! Check out the new pics of Lily. She is such a big girl and a good girl. Not sure of her exact weight but I would say about the 15-16 lb range. As you can see in the photos she's still running low on hair. No teeth.
8/20/08 - 9/10/08 Happy due date Lily!! Sorry for our hiatus but we've been just a little bit busy. Lily will be 15 weeks old on 9/11/08 and as of today she is 40 weeks gestational. We're doing good. Everyone is healthy. Lily had a cold last week, kind of scary, but she recovered within a few days. It was scary because her nose was really stuffed and with a baby so small it is really easy for them to stop breathing because they are so congested. If she had not been on a monitor she may have had to go to the hospital for close observation and to have her nose continually siphoned. I was able to keep up with Lily's drainage (which did not make her happy, she didn't appreciate having her nose suctioned every few hours), we survived. As of 9/05/08 Lily weighed 5 lbs 6 oz. The visiting nurse is now coming once a week for the next 3 weeks. Mine and Lily's life consists of a lot of doctor appointments to say the least, we keep VERY busy. Lily wakes about every 3 hours to eat and usually has at least 2 periods a day where she is very alert and intrigued by the world around her. We have our 3rd followup with the eye doctor on Thurs 9/12, the last two appointments went well as far as Lily's health is concerned. Lily would probably not agree that the appointments went well, but that's because she has to have a metal specula hold her eye open, not a very pleasant experience but all the patients (majority of them are elderly) really appreciate seeing her beautiful little face. She brightens the day for a lot of people. So... all is well. I will try and update her website more often, but right now I'm shooting for every 2-4 weeks. No new pictures ready to upload, but will get to that soon. Thanks for keeping up with Lily, when she gets older she will be amazed by all the love and support you have shown.
8/12/08 - 8/19/08 Life has been a little crazy since Lily has been home. Lily's doing good. She had her first appt with her pediatrician 8/13, all went well. The doctor was very impressed with how well Lily was doing. Lily rolled over in the doctor's office, the doctor said that she wouldn't believe it had she not seen it. Then on Fri (8/15) she had her first follow-up eye appt. So far so good, she will have another appt this Friday to continue to watch the blood vessels in her retina and make sure the abnormal growth stops. Lily will go back to the pediatrician next week and to the audiologist to have her ears checked.
Twice a week Lily sees the visiting nurse. On Monday (8/18) Lily weighed in at 4 lbs 5.5 oz. She's such a big girl!
We've had a lot going on... Lizzie and Luke have been sick. Lizzie has spent several days staying with her grandparents (both sets) and Luke has stayed with his Grandma and Grandpa Patterson for a few days. Lizzie is being treated for Bronchitis and just came home today for the first time in almost a week. (Since Lizzie was sick it was safest for Lily for Lizzie to not be around her.) Luke has a bad cough too but no fever. Mark has also been feeling ill. I went to the eye doctor last week (same day as Lily) and found out I have Keratitis. So, like I said before things have been a LITTLE crazy.
I've posted a few new pics of Lily. One is of Daddy with his little angel the day Lily came home from the hospital. Then another picture of Lily chilling on the couch and one of her relaxing in her spa.
8/03/08 - 8/11/08 So much has happened in a little over a week. It's been pretty hectic! On (Sat) 8/02 as I walked into the NICU the doctor shouted to me that it was okay to feed Lily all the time. I was like, "are you serious?", he said "would I lie to you?". He said she was doing great with her breastfeeding and it was time to go full force and that's the day that I moved into the hospital.
So... starting that afternoon me and Lily started breastfeeding at every feeding, except she had to have 2 bottles/day with formula (and breast milk) for extra calories. I basically didn't sleep for days, it was a big change for both of us. Lily had to use a lot of energy to breastfeed that often and she started out strong, but there were times when she only did it for 5-10 minutes. Basically if Lily continued to breastfeed without having to have any feeding through her feeding tube consistently she could go home. Then on Monday (8/04, I think... the days all kind of ran together), Lily hadn't woke up for her feeding for almost 4 hours (she should eat every 2-4 hours), the nurse said if she didn't wake up to eat they would have to feed her through her tube, which would set her release date back and I wasn't having that, so somehow I managed to get Lily to eat for almost 10 minutes, the nurse said that was adequate.
In addition to breastfeeding consistently Lily also had to gain weight. Assuming Lily kept up both the nurse practitioner said she could come home on Wednesday (8/06). Then on Tues (8/05) the nurse took Lily's feeding tube out. Tuesday night the nurse weighed Lily, and her weight on Tues night determined whether she would be released on Weds. All the nurses at the hospital weigh Lily differently, some will take off everything (clothes, diaper, leads, security tags), others will just take off her clothes and leave the rest on. Well when Lily was weighed Tues night she was weighed completely naked. The night before she was weighed with her security tag and leads still on, so she weighed less on Tues night. When I saw that she lost weight it really scared me so I asked the nurse if we could reweigh her, she said we could, so I put Lily's security tag and diaper on which made her weight increase by 10 grams. The nurse wrote it down as her official weight, 3 lbs 12.7 oz.
Wed morning the nurse practitioner saw Lily and said she was going home. She just had to see the eye doctor before she left at noon. The eye doctor has been seeing Lily every 2 weeks since she turned a month old. The eye doctor is looking for a disease called Retinopathy of Prematurity (ROP) which occurs in premature infants because their eyes are not done developing when they are born and as they continue to develop (after birth) abnormal blood vessels grow throughout the retina and can also cause retinal detachment, the end result... blindness. So... here we are, all ready to go home, waiting for the eye doctor to check her out and the eye doctor says that he wants to talk to us, we come to find out that he saw signs of ROP and that he wants us to see a retina specialist ASAP.
So... Wed afternoon Lily did go home but on Thurs we were at the retina's specialist's office who confirmed what the eye doctor saw the day before. He felt the best plan of action was to go ahead and have laser surgery, so on Friday Lily was back in the NICU at St. Luke's having laser surgery. It was all very scary. Especially since Lily had to be sedated. Surgery was scheduled for 1:00 but it was close to 3:00 before they got started. After the surgery Lily had to be able to wake up and eat before she could go home. After her second feeding, they discharged Lily. We got home about 11:30. I was so happy to have her at home again. There could have been complications with the surgery, such as Lily having to be put on a ventilator which could have resulted in a 1-2 day hospital stay but luckily she made it through like a trooper.
Now Lily will have to have eye exams often through her childhood to watch for signs of residual affects from the surgery. Hopefully the surgery itself fixed the ROP, but there is a possibility due to the surgery that she could be near-sited or have a lazy eye, which I would expect could be corrected as well. Lily has her first follow-up eye appt this Thursday.
There's so much going on... Lily is on a monitor to warn us if she has an apnea spell or if her heart rate gets really high or really low (brady). The outcome of the monitor results (which will be downloaded and viewed by Lily's pediatrician) will determine how long she will have to stay on the monitor. Lily will also be visited by a nurse at home twice a week for three weeks. She is currently taking iron and caffeine. She wakes every couple of hours ready to eat. And as of today is weighing in at 3 lbs 14 oz. Lily is such a remarkable baby. I'm so amazed that she is home with us, it feels wonderful and she made it home before anyone expected, 1 day before she turned 35 weeks gestational.
If you want to check out Lily's hospital picture from the day she came home you can goto: www.stlukescr.org. You will need to search by her birth date 5/29/08 and I believe you can also search by my name.
I don't have any at home photos yet but will hopefully get some taken soon and posted to the site.
7/29/08 - 8/02/08 Lily's weight has remained steady at 3 lbs 11.4 oz for the past 3 days. We started breastfeeding on 7/30 (once every 12 hours) and on 8/01 it was increased to two times a shift. They will do another evaluation on 8/03 to determine if it can be increased to three times a shift. Then once we are steady at three times a shift (earliest start date would be 8/04) we will move to anytime Lily wants to nurse. Breastfeeding is hard work for both myself and Lily. There's a lot of ups and downs. It takes a lot of energy for Lily to breastfeed so sometimes she does really well (up to 40 minutes), sometimes she only does it for 5 minutes. We have to consistently breastfeed before Lily can go home. I'm hoping for a miracle where one day she just decides to breastfeed for 40 minutes for each feeding and then the doctor says, "okay you can take her home".
7/28/08 Today's weight was 3 lbs 6.3 oz. Mommy gave Lily a bath today. Lily loves her baths, she thinks they are sooo relaxing. Lots of holding and Kangarooing today but Lily was too pooped after her bath to nuzzle. The doctor said we might be able to start breastfeeding in a couple of days and Lily getting out of her Isolette is also a couple to a few days away. Check out Lily's pic without the nasal cannula.
7/21/08 - 7/27/08 8 weeks old (33 weeks gestational) on 7/24/08. As of 7/26/08 weighing in at 3 lbs 4.9 oz. Once again Lily's MRSA test came back negative on 7/25/08. We started nuzzling on 7/21/08, Lily is doing really well at nuzzling. Some days she gets really pooped out trying to nuzzle because it takes so much of her energy, other days she will do it for 20 minutes before she poops out. Hopefully we will start breastfeeding any day now. I'm also anxious for Lily to get out of her Isolette and into a crib. Everyday they keep lowering the temperature on her Isolette, when it gets down low enough (26.5 degrees C) she'll be able to come out. As of 7/27 the temp was 26.9 C. On the afternoon of 7/24 Lily's nasal cannula was taken out, she has been breathing on her own without any support since, she's doing a great job. It's so nice to see her without an extra tube, I can't wait till she gets her feeding tube out of her nose, which will come out as soon as she is strictly eating orally. We're getting there... hopefully just a couple more weeks in the hospital and Lily will be home.
7/16/08 - 7/20/08 7 weeks old on the 17th! Lily and I were both tested for MRSA on the 16th, both of our test results came back negative. I was so happy! Lily and I (Daddy too) have been spending a lot of time Kangarooing. I try and Kangaroo as much as possible when I'm visiting her, one day last week we Kangarooed for 4.5 hrs straight. I would do it non-stop if I never had to get up to use the bathroom.
7/15/08 Lily's up to 2 lbs 9.3 oz. She got a bath today so she has some new pics looking all fresh. I was able to take Lily out of bed and put her back without any help today. It feels so good to get to take care of her myself. I only had a chance to Kangaroo with Lily for about an hour today. Daddy just took off on his bike to see Lily (it's almost 10:PM right now, Mark has a powerful bike light so he can ride at night). I'm glad Lily gets to spend some time with her Daddy, he hasn't had a chance to visit her for a few days, she'll be happy to see him!
7/11/08-7/14/08 Lily is doing great. She is 2 lbs 7.2 oz. We found out on Friday (7/11) that Lily could come out of isolation. Her culture of her nose came back negative on Thursday. They will continue to check both me and Lily every Wednesday for MRSA. The doctor said that most likely eventually over the next few weeks to months we could test positive again for MRSA. He said it's because MRSA is a bacteria living on all of us. Once the MRSA builds up enough it will test positive and they will deal with it when that time comes. He said that there is nothing we can do to prevent it, to just keep doing a good job of washing our hands, that's about all we can do.
7/10/08 6 weeks old! Some new pics of Lily. I only put a few out there because I plan on taking more everyday. More news later... I need to go visit Lily!
7/8/08 - 7/9/08 I'm really slacking on my website updates. I feel like I never have time to do it or I'm too tired. Looks like I gave you the same excuses on my last entry, at least I'm consistent, that's positive, right? So, I'm overly tired and cannot sleep, so here I am doing my update at 4:40 AM. I found out today that my culture came back negative for MRSA. So Lily started getting my breast milk again today. They did a culture of Lily's nose today and we should get that back in a day or two and hopefully it too will come back negative and then Lily can come out of isolation. I failed to mention that Lily was in isolation. Basically all the doctors and nurses have to wear gowns, masks and gloves when they touch anything in the room or Lily so as not to potentially spread the MRSA. Anyone that visits Lily is welcome to do the same for their protection against MRSA, however unless you touch someones actual infected area (i.e. open sore), chances are you won't get it. I have become an expert hand washer. I diligently wash my hands for the specified amount of time (15 seconds), scrubbing in between my fingers and past my wrists, and I always sanitize my hands when entering and exiting Lily's room. In a matter of a minute I might wash my hands three times. But you don't want to hear about my hand washing, you want to hear about Lily. Lily is doing good. Her weight is 2 lbs 5.9 oz. In the last few days she has gained a couple of ounces and it sorta concerned the doctor because she was having so many desats (where the oxygen level in the blood dips below 97%). Desats are not apnea spells, she really isn't having any apnea spells, which is good (apnea = she stops breathing). The doctor thought the desats could be any number of things such as, Lily getting used to the nasal cannula. The CPAP used to provide constant air pressure, which helped Lily's lungs inflate, now she has to do all the work, where we breathe 15 times a minute, Lily has to breathe more like 50 times, it takes a lot of energy and it could be that it's just too hard of work for her. Another possibility is she is retaining fluids or that she has an infection. If she is retaining fluids they would give her Lasiks like they did before. If they thought that Lily needed more help breathing, they might put her back on the CPAP, but the doctor said it wouldn't be for long if they had to and that it wouldn't be a step backwards (although it would feel like it to me). But so far she is doing good. The nurse said tonight that she didn't look like she was retaining fluid (no swelling) and that her desats and bradys had been good. I'm so sorry we still don't have any new pictures of Lily. I can't get them out of the camera because the memory card doesn't fit our laptop. I will take another camera to the hospital and take some pictures. She is such a beautiful baby. She is just so adorable. Tiny and perfect! All the nurses gawk at how cute she is. I wish everyone could see.
7/5/08 - 7/7/08 As you can see I've been slacking on my updating the website duties. I'm often exhausted at night, so I don't get much done and in the morning I'm in such a hurry to see Lily I don't want to spend the time to update the web page in the morning. Lily is doing really good. Her weight is 2 lbs 3.3 oz. Her CPAP was taking off yesterday and they tried to let her breathe without any support for about 20 minutes but she was having so many apnea spells they decided to give her a nasal cannula. Which is just little prongs that go in her nose. If you were hospitalized you might have the same thing. Today they had added sticky whiskers (like tape) to keep the nasal cannula in between Lily is notorious for pulling them out, along with her feeding tube which she has done a few times. I can't imagine why she wouldn't want so many tubes going in her body (hope you sensed my sarcasm). She is so pretty, but you have to see her, pictures don't capture how adorable she is and I have lots of pictures, but there's a memory card compatibilty issue. She also had her last dose of antibiotics today. They did a culture of one of the areas I had a sore on (which had tested positive for MRSA) so hopefully that will come back tomorrow negative and I can start to give Lily my breast milk.
7/4/08 Happy 4th of July! I'm heading to the hospital to see my baby girl. Will try and update the site soon.
7/3/08 5 weeks old today (30.1 weeks gestation)! Not much changes. She's getting 17 ml per feeding, which she has been getting for a while (at least a week). Her weight is 2 lbs 1.8 oz, guess she had a growth spurt, it could be the cheese burgers I've been sneaking in to her. She looks really good with a little weight on her. I can't wait until she's a chubby little baby. We have new pictures, but I need to have Mark put them on the site. Pictures just don't do Lily justice, she's much cuter in person, such a sweet little princess. We Kangarooed a couple times today. Good news... the twins came back negative for MRSA, what a relief!
7/2/08 Weight increased slightly to 2 lbs .3 oz. Today I spoke to the doctor who said Lily is doing "extremely well". He said that when they got the tests results back that indicated she had an infection they were really surprised because she didn't act sick. The next day after they found the infection they did a blood culture which showed no growth and it continues to show no growth (they continue to allow it to grow). He also mentioned changing Lily's CPAP machine to a Vaportherm which I think is like a nasal cannula (a tube with prongs that go in your nose). He also said her Apnea spells may be related to the infection. He said that the culture itself, since it only showed growth the first day the caused the infection may mean that either there was a contaminant or just a really low-grade infection. As always I Kangarooed with Lily today and Dad some time up there during the night and into early morning.
7/1/08 Lily is up to 2 lbs .1 oz (guess I need to start looking for a car, I wonder if they make pink Matchbox cars). She is doing well. Her blood culture came back today showing no growth. However I'm told that the next culture could come back showing growth. They will continue to do a culture everyday and if it comes back negative consecutively for 5-6 days, she has fought the infection. I was started on strong antibiotics today with a course of 10 days. The twins were tested for MRSA, my fingers are crossed that they too will come back negative. I Kangarooed with Lily for 2 hours today. Luke and Elizabeth visited Lily for the first time in weeks. Luke really wanted to touch her, but I told him he can when she gets a little bit bigger.
6/30/08 Lily's weight is 1 lb 15.1 oz. The results came back from the blood culture which does show an infection. One of the antibiotics they are treating her with is one of the strongest, if not the strongest antibiotic there is, so they seem pretty optimistic that Lily is going to kick this. I spoke to the doctor today and he seemed very positive. He said that it is very unusual to have a baby come back with positive results and show no clinical sign of an illness. She is tolerating her feedings. She is gaining weight. She has had few apnea spells and her heart rate has been good. The doctor said they will treat her for several more days, then they will continue to treat her for about a week after her labs come back showing the infection has cleared. Right now she is getting donor milk. Once my culture comes back negative then I can start giving her my milk again.
6/29/08 Today we learned that Lily does have an infection. They did a few different tests, all of which pointed to an infection, so they started treating Lily with two different antibiotics. I have been so worried about Lily. She was doing so well and then this happens. They are doing a blood culture to see if the she has an infection in her blood, which is the worst kind. Her weight was up to 1 lb 14.5 oz. Mark's culture came back negative for MRSA.
6/28/08 Lily's weight was down today to 816 grams. However the nurse doesn't know if she weighed her properly. They did a culture of both myself and Mark to make sure we didn't get MRSA from holding Lily. My culture came back positive. Mark's had not come back yet. Chances are that I got the MRSA when I was in the hospital myself and I probably gave it to Lily. There's not 100% certainty, but I just feel horrible thinking that I may have caused my baby to get sick. The doctor gave me some ointment to start treating myself, but I will have to go to see my doctor.
6/27/08 Today's weight is 845 (1 lb 13.8 oz). They did a culture of her eye and her nose and found that she carries MRSA - a type of staph which is a bacteria. They noticed that Lily had some yellow crusty stuff in her eye and that is what prompted the test. The doctor spoke with us today about MRSA and Lily. Lily has MRSA in her eye and nose. The doctors had never treated a child the size of Lily for MRSA and they had to consult an infection specialist at the University of Iowa before determining how to treat it. They decided not to treat her eye because it is not an infection. They will treat her nose even though that is not an infection either. Apparently, nothing has changed in terms of her progress and that fact that she carries MRSA should not affect her unless she gets an infection.
6/26/08 Her weight is the 837 grams as posted last night (they take her weight at night and I usually find it out the next day). Today I spoke to one of the nurse practitioners who said they would be doing a chest xray and a blood gas (sampling of the blood levels and carbon dioxide within the arteries). The chest xray will give them an idea of how to proceed with the CPAP (increase/decrease). Her food intake was increased to 15.5 ml. Depending on her weight gain will determine when they increase it again. Lily's CPAP has been decreased to 4. At family rounds today Lily had met all of her goals, which were to decrease CPAP, tolerate feeding and to continue to Kangaroo. Goals for next week include decreasing CPAP, continuing to tolerate feedings. I Kangarooed with Lily for about 2 hours today and Dad came this evening to Kangaroo with her, he said it really helped her calm down.
6/25/08 Another day without a lot of news. Either they failed to weigh her last night or they failed to write it down. She still seems to be doing pretty good. Although I guess at night she has been having quite a few apneic spells. Mark came and Kangarooed with her last night and the nurse said that really helped to settle her down. Either Mark or I will come back tonight to Kangaroo since it helped so much last night. I Kangarooed today for a couple of hours. Lily loved it.
6/24/08 There's not much to say when Lily's doing so well. She's gained weight, she's up to 818 grams (1 lb 12.9 oz). I haven't spoken to the doctor or nurses yet today so no new information at this time, but will update the site later. I didn't end up Kangarooing last night, There's just so much to do, it's hard to balance life between the hospital and home, I can't imagine what it will be like once I go back to work. i WILL Kangaroo today. I plan on doing it at Lily next feeding which is at 3:PM. More to follow...
6/23/08 We're making progress! Today Lily's PIC line was removed therefore she is no longer on IV fluid. She still continues to receive caffeine through her feeding tube. Her feeding was increased to 13 ml. I'm thinking about coming back and Kangarooing in the evening because I won't have enough time to do it during the day. May have more info later... Forgot to mention she weighed in at 795 grams (1 lb 12 oz), what a heavy weight.
6/22/08 Another good day for Lily. Her weight is 781 grams (1 lb 11.5 oz). No real changes today except for an increase in her feedings, which were increased to 12 ml. All labs and xrays came back good. Lily's been peeing a lot per the Lasik. I Kangarooed with her for 1.5 hours and gave Lily a bath. Her bath was actually in a little tub. The nurse helped. The nurse held her while I cleaned Lily. The nurse had to keep her left foot out of the water because of her PIC line. I cleaned Lily gently but quickly because she gets cold fast and then we got her in a new bed (incubator), because they change them out every week.
6/21/08 Today Lily weighed in at 776 grams (1 lb 11.2 oz). Due to Lily's recent high level of CO2 and large weight gain she was started on Lasik which is like a water pill which will ,make her pee a lot and hopefully aid in ridding her body of the CO2. In addition, her CPAP machine was changed also in hopes to helping the CO2 level and as an added comfort, supposedly the new CPAP is more comfortable and it certainly looks as it is. Her feeding was increased to 10.5 ml. I Kangarooed with Lily for a little over 2 hours before they had to put her back to bed for an xray. Don't be surprised if Lily's weight drops due to the Lasik as she gets rid of some water weight.
6/20/08 Lily continues to do well. Has had some apneic spells. Still at a CPAP of 6 with supplemental oxygen of 27-33%. She has gained 8 grams. Her weight is 740 grams (1 lb 10.2 ounces). When she gets to two pounds I told her that I'd buy her a car (it will have to be a toy car of course, but she doesn't know the difference). I have found out as a parent that bribing your children does work. I often bribe Luke and Elizabeth with money to get dressed, it's amazing how much time you can buy with a penny. Back to Lily... labs came back okay today. She will have more labs at 6:PM. Her feedings were increased to 9.2 ml/3 hours. Because of the increase in the feedings, they are stopping the lipids they have been giving her. All in all, Lily is having a good day. I will Kangaroo with her here in about 20 minutes. Hopefully the rest of the day stays calm and I won't have more to share until tomorrow.
6/19/08 3 weeks old! When they did Lily's labs this morning it came back with high levels of CO2 (Carbon Dioxide), so they did an xray of her tummy. The xray showed bubbles of gas in her tummy. Therefore they have been laying her on her tummy to help release some of that gas, they also readjusted her feeding tube to help from causing the build-up of more gas. Due to the build-up of gas, her breathing has been more shallow because her full tummy is stealing some of her lungs room and therefore ability for deeper breathing, so her CPAP was increased to 6 and she is getting 37% of supplemental oxygen. She is getting the same level of milk however they are adding additional protein which will increase the calorie intake from 22 to 24/ounce per feeding. Either they failed to weigh her last night or failed to write it down so no new weight for today. Today was "family rounds" where NICU support staff, nurses and doctors come in to discuss Lily's status and to set goals for next week. All her goals from last week were met which were to treat her infection, get her off the ventilator and back on the CPAP, tolerate her feeding and to continue to Kangaroo. Goals for this week are to decrease her CPAP to 4 or 5, continue to tolerate feeding and continuing to Kangaroo. The nurse practitioner said Lily should be able to have her PIC line removed next week and therefore stopping IV fluids because of the increase in her intake of fortified breast milk. I Kangarooed with Lily for about 1.5 hours.
6/18/08 I'm writing this just before I'm getting ready to pump again for the 6th time today. If you have ever strictly pumped your breast milk, you spend about a 1/3 of your day being a milk cow. I am supposed to pump 8 times a day. I typically pump 6-7 times a day for about 45 minutes each time and produce over 30 ounces of milk/day. Not so much fun but VERY important. The doctors and nurses tell me it's the most important thing I am doing for Lily, the most important thing anyone could do for her, and it is the best medicine she has. Breast milk is full of antibodies. I am constantly building antibodies whenever I come in contact to any type of bacteria, virus or fungus. They say fresh is best because fresh milk provides Lily with the latest and greatest of antibodies. Besides the antibodies, milk is the perfect first food for a baby, it provides a perfect formula of fats, proteins, vitamins, minerals, enzymes and hormones. But enough about me and my milk... onto Lily.
Lily had a good day. She got another blood transfusion this morning which we knew was going to happen. One of the reasons Lily needs to have a blood transfusion is because they are constantly (every 1-2 days) drawing labs from her. She will have labs again tomorrow morning. Hopefully the blood will make Lily strong enough to decrease her CPAP setting and eventually lead to a nasal cannula which is a nasal aspirator for a baby, the last step before going off of oxygen support all together. Yesterday was Lily's last day of antibiotics (she was treated for 7 days). She continues to get 8 ml/3 hours of breast milk, however they are fortifying it more than they were yesterday in an effort to increase her calorie intake. Before she gets fed they check to see if she has any food left in her belly from the previous feeding by inserting a syringe in her feeding tube, they suck out any excess food that hasn't been digested. If she has food in her belly that hasn't been digested (her belly is full) they don't want to feed her more. As far as I know (at least when I'm there) she always eats all of her food, which is good, it means all her organs they are used in digesting her food are working right.
Lily's weight remained at a steady 732 grams (1 lb 9.8 oz). Lily Kangarooed with me (Mommy) for about 1.5 hours today. Can't wait to see her tomorrow.
6/17/08 Just got done changing Lily's diaper. She was not happy with me. You wouldn't believe such a little thing would be so strong, but she is. You should see her lift her head up and move around or grasp a hold of your finger. Lily gained weight for the third day in a row. She is up to 732 grams (1 lb 9.8 oz), which means she gained 32 grams, that's her biggest weight gain to date. Her feeding has been increased to 8 ml/3 hours which is 1/3 of an ounce. Not a lot of changes. Her IV fluids get reevaluated daily, adjusted based on the nutrition that is needed. No new labs today. Her hemoglobin level is still high enough that they have not ordered a blood transfusion, but chances are one will be ordered again soon. Her CPAP is still set to 5. Her supplemental oxygen is constantly being decreased and increased but stays in the 21 (room air) - 27 range. If she has more apnea spells then they may increase it. If her oxygen saturation is good they may decrease it. I plan on Kangarooing with Lily again today. Today is Luke and Elizabeth's first day of soccer so I'm not sure how long I will be able to Kangaroo. More info to follow...
I was also able to give Lily a sponge bath today. The nurse left her CPAP on so I didn't get to see her whole pretty little face. I had to wash around all of her tubes and I'm always a little bit scared when I do something for the first time because I don't want to do anything wrong. But we both made it through the sponge bath and I can't wait for the next one.
6/16/08 Lily is up to 700 grams (1 lb 8 oz). She has grown to 13". She is doing well. Her labs all came back okay. Her hemoglobin was low (which determines how many of her red blood cells are carrying oxygen). Which may mean that sometime in the near future Lily may need another blood transfusion. The nurse said that by the time Lily goes home she could have 10-15 blood transfusions. So far she has only had two. They have started to fortify her milk to increase the calories. Breast milk has 20 calories/ounce, by fortifying it they will be adding another 2 calories/ounce. We also found out that Lily's infection was determined to be a Urinary Tract Infection, however there is no way to determine the cause. I am waiting to Kangaroo with Lily. Yesterday she really enjoyed Kangarooing and was upset when I had to leave. Whenever I talk to her she always perks up and listens, it's so nice to have someone so excited to hear your voice. When I first got here today she was so alert and had her eyes open. Such a sweet baby.
6/15/08 Father's Day! I had a short day with Lily today. I was with Luke and Lizzy this morning and didn't get to Lily's room till after 2:PM. Lily is up to 690 grams today. Her feeding was increased to 7 ml every 3 hours. I got to watch Lily get a sponge bath today. It was very exciting because she had her CPAP off and I could see all of her. She is so cute! I Kangarooed for an hour and left around shortly after 4:30.
6/14/08 There were not a lot of changes today. She is at 680 grams. Her CPAP setting were increased from 4 to 5. She had a few spells of apnea, but she did a good job of bringing herself out of it. Mom was once again able to Kangaroo.
6/13/08 It was a good day for Lily! She is up to 690 grams this morning. As previously mentioned she does have an infection but she is being treated with antibiotics. She had some tests done recently and the results were positive. Because she is stable, she will be coming off the ventilator this evening and will be back on the Nasal CPAP. Mom did get to kangaroo today. We'll get some of those pictures posted soon. Lily was opening her eyes for us!
On a side note, the flooding did effect us a little. Yesterday, St. Luke's did not have power except for that being provided by the backup generators.
6/12/08 Baby girl is two weeks old today. She is still at 670 grams. Early in the day her latest test showed that her infection has worsened, but she has been on antibiotics and should be improving. Her feedings are still suspended and we could not hold her today. This evening they lowered her "breaths per minute" on the respirator which means she is receiving less support and the nurse said she had a good day today. Tomorrow she should have feeding resumed and we should be able to hold her.
6/11/08 I got a call a little before 10:00 AM from the doctor. The blood transfusion didn't seem to help the apnea spells. They decided to put Lily back on the ventilator, however at a low setting. The ventilator mechanically gives her oxygen every 3 seconds. With her apnea spells she would go 20 seconds or more without breathing. Her oxygen saturation had dipped dramatically at times down to 8, usually it's in the 90's to 100. If it goes below 85 it typically means Lily is forgetting to breathe. They never had to put a mask on her face to force her to breathe, but they did come close. They are also treating Lily for an infection. They did a lot of labs, including urine, blood and spinal. They took cultures and will wait for them to grow for 24 hours. Depending on how her labs come back will determine how long they treat her for the infection. At this point it looks like she may have a bacterial infection, but nothing severe, they will treat her for the infection anywhere from 2, 7, 10 or 14 days. I have been told this too is very common for premature babies. Because her immune system is very immature she can easily get an infection and this may not be her last. Also, may be due to her white blood cell count being low soon after she was born, which has since increased due to medication. They may never truly be able to tell the cause of the infection or the apnea spells. However, the infection may have been caused by the PIC line which is a direct line from her skin to her blood, or it could have been caused by any of the numerous times they have poked her for labs, or even something airborne in the room.
On the flip side, now that Lily is back on the ventilator they don't have her all covered up with the CPAP so we can see her pretty little face. She reminds me of Luke when he was a baby. She also increased her weight. She is up to 670 grams (1 lb 8 oz) which is her birth weight. Due to Lily's big morning, she needs a lot of rest, so chances are I will not be able to hold her today, but as she becomes more stable, (most likely tomorrow) I should be able to go back to holding her. I can't wait. They've also stopped Lily's feeding for now. But when they do go back to feeding her, they will start off where they left off. Yesterday she was getting about 5.6 ml every 3 hours. They wanted to stop the feeding because if she had an infection they didn't want her to have anything in her stomach.
6/10/08 Lily went down in weight to 640 grams (1 lb 7 oz). She's still on the CPAP. Continues to have apnea spells. Mom Kangarooed with her for over 2 hours today. I wish I could do it all the time because I would. I love holding her and she loves me holding her too. It's awesome. I also got to see Lily open her left eye a few times. I was so excited! Other people had thought they saw her open her eye over the past couple of days but I wasn't going to believe it before I saw it myself.
We got a call from the hospital at about 10:00 PM. Lily's apnea spells have doubled and her blood count is down. (Blood cells are what carry the oxygen in the body.) They decided to do another blood transfusion. They are hoping the increase in apnea spells is just due to anemia and the blood transfusion will correct that. Scary, but once again I am told this is common.
6/9/08 Mark went back to work and Mom was with Lily most of the day. They tried to decrease her CPAP to 3, but the nurse said she was having more "spells" (apnea) so she is back at 4. She is still gaining weight and is now up to a whopping 650 grams (1 pound 7 ounces)! Mom spent a lot of time Kangarooing. She was excited to see Lily wearing clothes, despite them not fitting very well. She was also excited to change a poopy diaper (super runny due to the breast milk, you wouldn't think such a small thing could make such a big poop). That's all for today. There are a couple new pics posted of Lily and daddy kangarooing from the day before yesterday.
6/8/08 Lily is gaining weight! She is now up to 640 grams - she is definitely making some progress. Mom Kangarooed today for a couple hours until Lily was ready to get wrapped back up and headed for the incubator.
6/7/08 Sarah and I are back with Lily today. She continues to progress and has been gaining weight, and tolerating her feedings as they increase. She has not had any periods of apnea for some time. Her weight is increased and she is up to 610 grams. It's time for dad to Kangaroo!!
Her Nasal CPAP was decreased from 5 to 4 which is typically the lowest setting and she is not using any supplemental oxygen. Lily looks comfy laying on Daddy. Now the real test is to see how long Daddy can stay awake. It's not looking too good. Mommy may get to Kangaroo later in the day.
6/6/08 We had another positive day for Lily. Her feedings have been increased and the doctors will watch to make sure her digestive system tolerates it well. Her intestines are still developing, as are all of her organs at this point, and her feedings (breast milk) will be slowly and deliberately increased. We hope she begins to gain some weight. Mom Kangarooed today for at least a couple hours. They both really enjoyed their time together. Lily is 600 grams today.
6/5/08 Lily is still doing great!! She is back on photo therapy, but that is to be expected. As I am writing this she is getting an ultrasound on her head to check for and bleeding in her brain. She had her first ultrasound a few days ago and things looked well, hopefully today goes well also. They chose to do the ultrasound today because it has been one week and if a baby is going to have issues with a bleeding in the brain it almost always occurs in the first week after birth.
The ultrasound went well. When the doctor came back he didn't see anything. They thought they may have seen a small amount of bleeding in the first ultrasound earlier in the week. However, if there is a spot, it's very small it most likely just a bruise that will heal within time. She will get another ultrasound in 2 weeks to a month.
Daddy Kangarooed with her today. They both slept. Lily really seemed to enjoy it. She was so comfy.
Yesterday was the first time I heard her cry. She kind of sounds like a little puppy. Very soft, little whimpers. Whenever she cried today it made my heart sink.
6/4/08 Lily is making a lot of progress! The removed the central line in her belly button and are now using a PIC line which delivers nutrients through an IV. Her photo therapy was ceased because she responded so well to the treatment and we now can spend some time with her shades removed. She is trying very hard to open her eyes, but they are still fused shut. The most significant step forward was that the Lily was removed from the ventilator last night at 7PM and she has been doing great without the extra help. She goes through periods of apnea where she forgets to breath, but so far she has responded to a little stimulation, like rubbing her leg or back and she will begin to breathe again. Mom and baby were united for some "Kangarooing" today and Lily LOVED IT!! She spent over two hours lying on Sarah's chest.
Lily also had her first poop today. Which is really good. The more she poops the more acky stuff she gets out of her system.
6/3/08 Lily Marcine Patterson was born on May 29, 2008. Lily was born at 25.1 weeks of gestation with a birth weight of 670 grams, or 1 pound and 7.63 ounces.
Sarah's due date was September 10, 2008. She (Sarah) developed pregnancy induced hypertension (high blood pressure). She was admitted to the hospital one day before Lily was born. She was given one dose of a steroid, which helped Lily's lungs to mature. On the day she delivered Lily, Sarah experienced a significant drop in her blood pressure, and Lily's heart rate was low. Sarah was taken for an emergent cesarean section delivery. After Lily was delivered, she was given support for her breathing and then she was transferred to her bedroom in the Newborn Intensive Care Unit (NICU).
A breathing tube was placed in Lily's windpipe and she was placed on a ventilator. She was given a medication (survanta) through her breathing tube. - easier by reducing the surface tension in her lungs. A central line was placed in the artery in her belly button. Through the line Lily received nutrition and medication. She was provided with two antibiotics, to prevent infection. She was given a medication (caffeine) to help her sustain a regular breathing rate. Lily developed a condition known as patent ductus arteriosis, or PDA. The open duct connects two large arteries between the heart and lungs. The duct normally closes at birth, but often stays open in premature babies. The open duct was closed with a medication (indometacin). Lily has received one blood transfusion. She was treated for newborn jaundice with photo therapy. She had some skin breakdown, which was treated with an ointment. Lily used the support of an incubator to help her sustain her body temperature